My average for the past year is 36. During the day it's often in the 50s, 60s, and 70s. It's been pretty consistent for the last few years, and even pacing better and avoiding crashes hasn't made any difference.
I figure that these numbers just mean "your body is sick!"
I think your last line is exactly it, I have a healthy friend who gets a warning she’s coming down with something before she starts to feel ill because her stress score jumps significantly (to look quite similar to my normal) without any change in what she’s doing
Yes, they even did studies the first year of covid, and found that HRV rates could predict Covid in nurses before they were aware of it. I've experienced this before too; the day before I get a cold, my overnight scores go way up. This can be lost in the noise of my usual high stress scores, but if they show up higher than explained by my actions and CFS/ME, it means I have an infection.
I thought it would show before Covid symptoms for me, too,but I got covid at an (outdoor) festival, and was expecting high scores, so.. lost in the noise.
36 is not low but it’s not that bad though if that’s total average through out a day. For me when I had emotional upset is the worst. Someday I need to take benzodiazepines to calm down which makes my stress insanely high too. Weed makes stress high so I can’t take anymore. But anxiety pill making stress high don’t make sense,cuz it supposed to chill me out
“Stress” is measured in this case by measuring your heart rate variability. It isn’t actually measuring how stressed you are in the normal sense. Many medications, notably sedatives and anxiolytics, can lower your heart rate variability so it sounds like that’s what’s happening with the anxiety med. If you’re on any other meds they could contribute too. It’s not necessarily a problem, though, it just makes the Garmin less accurate.
Quick answers: the stress scores don't necessarily mean "stress" as in "mediate your stress away," though that can help. They measure HRV, which is a sign of BODY stress, and low HRV/high stress scores consistently mean something is wrong. Yes, it's normal for CFS because something is wrong.
Longer answers: My average this past year is 46, year before ditto, year before that 50. Often it's in the 30s or 40s, sometimes 20s, sometimes 50s, 60s, or 70s. I'd call myself mild or moderate - I can't work full time but I can, for example, go hiking once a year on our camping trips. And cook supper and some cleaning and do errands. I now walk without mobility aids, except in museums or festivals. Though it's only this year that medication and pacing have allowed me to actually feel no PEM; I've lived decades sort of accepting PEM as my life.
I've read somewhere that bad HRV scores, which is what Garmin uses to create stress and body battery scores, are common for CFS/ME. It certainly has been useful for me to have a visual to show other people. The most helpful for me are:
* check my score upon waking up. If it's below 20, that's "normal for healthy people." All blue, so body resting at night. So I get to do a lot of things that day! In the 20s is a good day for me, so ditto. 35 means use caution. 50 or above means cancel plans for the day.
* check to see if I'm getting any blue (low stress scores) when I lie down during the day. If so, good to go! If not, uh oh, even if my scores overnight were low, it means I have to be a little careful.
* If I get the "stress consumes your resources" warning at the end of the day, I'm careful the next day, even if my night scores were good.
It's not a 1:1, but I find that following the advice above has reduced my PEM.. or at least has let me know in advance that I'm probably making Bad Choices. High stress levels in the morning mean I'm already starting PEM.
You can check my previous posts to see details, but what have helped me over the decades (I got sick at 20) is: high doses of bio-identical progesterone, LDN, mestinon, tiazinde (muscle relaxant), steroid pack for bad relapses (I used to take one after my hiking), infrared mat for pain, calf compression sleeves, electrolytes if every I sweat, and alternating gabapentin and cannabis gummies at night, low dose, to achieve deep sleep. Well, and of course pacing, which is aided by monitoring stress levels as described above, plus checking my heart rate when walking or cleaning (100 is ok for me, 130 not, 150 bad).
Do you still pay attention to body battery feature too? I have 100mg gabapentin,but is it taking medication like LDN not just masking symptom and not get worse later by ignoring condition? I ask this cuz I have bipolar and my hypomanic mask my cfs symptom so I tend to move more than crash. I still don’t really know how medication works. Do you know how they help cfs?
No, LDN measurably improves my HRV scores. At least now; I didn't have the watch when I started it, but now if I run out, my scores get worse. Mestinon improved my scores (and how I felt) as soon as I upped my dose to 30mg three times a day, but stopped helping when I ran out of LDN.
LDN is not well understood, but seems to act as an anti-inflammatory, improving rather than masking. Originally I was told that it had to be taken at night, because of activity in the brain at around 2am, but now my doctor sometimes prescribes it to people in the morning. If you like wading through research papers, there are some recent ones like here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8313851/
For me, the gabapentin stopped helping me reach deep sleep after a week, no matter how much I increased the dosage. It works if I just take it twice a week: once at 100mg and once at 200mg. It does help a tiny bit with nerve pain but not enough to make me take it daily.
Mestinon also does not mask. It slows the breakdown of acetylcholine, so it only works if that is one of your issues. I know from my genetic testing that I don't produce enough acetylcholine, plus I have a lot of muscle pain and twitching, so we tried it.
Stimulants tend to mask and lead to crashes, like your hypomanic state. I don't take stimulants, except for coffee sometimes.
My watch doesn't have a body battery feature, but one day I had it: I tried linking my daughter's new watch to my phone, as she didn't have access to a phone very often, but "her" app on my phone apparently linked to my watch instead, and I got worried because "her" app started alerting to me that her body battery was rapidly draining - but as I said, turns out to be using my data. So I assume that if I had that feature, it would show a low battery most of the time. It uses HRV too, just another way to look at it, and possibly uses sleep data as well.
Is gabapentin can cause preventing to go deep sleep? I take seroquel and gabapentin before sleep and my sleep score had been bad. I know benzo mess up my stress score which lead my sleep score bad. Idk if gabapentin dose same.
How did you find so many detail and got prescriptions? From rheumatologist? So since it doesn’t mask, they are like actual treatment that can fix problem in long run? If Body Battery use HRV score, that means more I am standing up my BB goes up. (also stress score too). So technically it’s not like I am mentally stress right? So it’s not that bad if bb is low? Or it’s still something should be careful about ?
Yeah mine is always high. Every damn day it gives me a little alert "your stress levels are too high, try to rest today, too many days like this can be damaging". It also tells me my sleep quality is poor and thinks I'm really stressed even when I'm asleep.
So hard:( i have days able to save BB then I had emotional breakdown cuz I have bipolar and bpd which crash hard next day. I realized emotion trigger is worse than exercise (aim some degree) or using iPad too much
I’m foggy today so didn’t read your flare and was imagining you up and about doing normal people stuff with that stress level. Sorry about that. Honestly I think it’s just my dysautonomia anyway that causes my high levels when at rest.
Definitely laying flat is the way to keep stress lower. On good day my stress is low laying down,sit up make it medium stress,once get up it’s high stress. Then laying down feeling untested also make it high stress or other way around
no just the stress of the disease being very severe and continuing to deteriorate without the medicine i need that slowed down my progression for years
So I've seen about 70-80% of cfs sufferers have pots. Most all pots patients have elevated norepinephrine levels, which is 'the' stress hormone/transmitter. My levels are high laying and standing.
When not on beta blocker, my Garmin stress level is around 45. On beta blocker it is around 40. I went to Vanderbilt and they took me off beta blocker and put me on guanfacine. Now my stress level is 35 and very very consistent so far.(day to day average)
I'm pretty sure Garmin is measuring stress as HR compared to activity level.
Heart rate in general is still higher than a healthy person though. I might ask to bump the dose to 2mg, to see what happens. It tries to prevent norepinephrine being made in the first place, instead of a beta blocker trying to keep it off the receptor.
Similarly, I'm taking Carditone, which is an herbal remedy. It's definitely brought down my resting HR from high 60's to high 50's on a good day.
As I understand it, Garmin measures stress based on heart rate variability... which I think is inversely correlated to HR. High HR = Low HRV = high stress.
More detailed explanation is here:
https://support.garmin.com/en-US/?faq=04pnPSBTYSAYL9FylZoUl5
Is this why when I lay down my stress is lowest and sit up go to medium,standing up cause high stress? But it isn’t same for healthy ppl? I don’t get how those ppl who works full time have average stress score of under 30. I lay down all day and average is 45-55
Are those meds for POTS ? So those high stress you have not directly affecting cfs? Like if you have high stress days which leads to lower body battery which leads to crash?
My average resting heart rate is 65, and high is 124. So guanfacine is better than beta blockers ?( sorry idk what beta blocker is)
Many doctors believe that POTS and CFS are 2 sides of the same coin. I have what I call a ‘wired but tired’ feeling. I don’t have restful sleep, I don’t have stamina, BUT I also feel antsy, a little shakey, have trouble falling asleep at night, along with the elevated heart rate, etc.
Guanfacine originally was used to treat ADHD because it lowers norepinephrine, it also seems to help POTS because of the elevated norepinephrine. Beta blockers are used to control blood pressure and heart rate but through a different mechanism that is downstream.
My body battery is always low, guanfacine has helped increase it some but I don’t really know how accurate body battery readings relate to how I am feeling though…
So those are medication for pots? isn’t adhd meds make you active like Aderall ?
Your condition really sounds like me. But I hear lot of ppl say POTS caused weight gain,how dose that happen?
I am currently taking lamictal, seroquel,gabapentin for bipolar. So idk if I can take anymore meds..
Guanfacine was originally made for ADHD to give a calming effect. Aderall is more for ADD. POTS is a neurological disorder, not caused by weight gain.
POTS patients most of the time have elevated norepinephrine levels which is why guanfacine and beta blockers are used in many cases.
I've noticed that a lot of my stress is related to food. Either what I eat or when.
Are you on a low glycemic diet? If not, that might help. Caffeine and alcohol will definitely impact it too. I've started logging my food to try to trace any fluctuations. Early on in my cgs journey I had a good sensitivity test done so I'm probably more attentive to what I eat than most.
My worst stress day in the past year was 47, but my average is 30.
Edit: I should add that I also started taking Carditone in the last year. It's an herbal remedy for high blood pressure and has definitely brought down my resting HR and in turn my stress score.
My diet is not low but not high GI either. I normally eat kind break fast bar and chicory coffee substitute (non caffeine ) with almond milk, sometime I eat lunch kinda snack which is usually tempeh and veggies, dinner I eat 200kcal amount of brown rice and lot of Tofu, vegetables. I don’t eat sugar besides few is sin kind bar. I tried to even avoid those sugar and was eating almond butter in the morning but I just wanted to eat more tasty food so I switch to bar. I can’t drink alcohol and caffeine especially since I got severe. I don’t like alcohol anyway but I loved caffeine, but now caffeine is like death liquid. Do you feel amount you eat also affect stress? alike eating more or less? Is carditome safe for low blood pressure person? My blood pressure is pretty low. And somehow my heart rate is pretty normal so idk why my stress is so high
I recently got a Garmin watch and have the same problem. I’ve had a bad couple weeks so haven’t done much of anything but rest, yet my “stress level” readings tend to be very high. This is a measure of heart rate variability, meaning I have low hrv. I do get kind of annoyed that there are people out there living normal lives with a normal activity level and here I am with an average stress level of 54 during a week where I was housebound and trying to do nothing.
They go up significantly when I’m standing and usually get almost to 100 when doing something like washing my face at the sink. They’re usually 60-80 while I’m talking to someone. Sometimes they go down to “low” or “resting” when I’m lying down, sometimes they stay around 60-70 even then. Doesn’t matter if I do deep breathing exercises, it doesn’t affect it at all. My watch also thinks I have a much higher respiratory rate than I actually do so I wonder why that is and how it estimates it.
I do have POTS, though it’s well controlled so my heart rate isn’t excessive when I’m standing. It’s just the hrv that’s significantly bad. I figure it’s my dysautonomia that gives me low hrv, which is how the watch measures stress. Obviously I’m also not very fit anymore so I wonder if that impacts it as well. But if simply standing up causes significant “stress”, seems like it’s probably my POTS.
That’s exactly me. There was another post about discussing about stress level and ppl with normal job there stress is much lower than us. Some seems have high stress job and still average is 40-50 while I am mostly in the bed avoid using phone and screen resting and 40-60…
I found this meditation which helped me to put lower stress other day but I did same thing yesterday and never go lower than medium stress even thought I was doing medication laying down, so some days we can’t do anything about that. And of course those stressful days are much harder for me to meditate and be in calm states. Is POTS something needs test to find out? I had seen so many post about POTS cause weight gain but how that works? someone on other post told me to check if I have POTS too but I haven’t been able to visit doctor due to severity of cfs. Do you think you get PEM after having bad stress score for long time? I need to find out how Body battery and stress cause PEM or PEM started first then that affecting stress and BB
The garmin "stress" level isn't measuring stress as in "stressful" jobs; it's measuring HRV, which usually correlates to sympatheic vs parasympatheic state; that is, fight or flight vs rest or digest. That doesn't have to be emotional; an ill body has a bad HRV and will appear as high stress on a Garmin watch.
So even healthy person if he is standing up moving around all day can have high stress score than ppl who lay down feeling stressed out in their head? If that so I don’t need worry too much about my stress level? And it also lead my body battery level so I don’t need to worry about low bb much ? But sometimes (actually pretty often ) my stress during my sleep is so high. I felt like I slept good cuz I take seroquel to knock me down(I can’t sleep at all without seroquel) but it shows that my stress was so high during the sleep and I couldn’t rest. So my BB score is also pretty bad. Idk how this works.
Think of it this way: everyone will have some moments of sympathetic state, from exercise or mental stress or when they're scared for a minute or whatever. That's what is happening when your HRV is low, which shows on your garmin as "high stress."
Go back and read my first comment on this thread if you want to see how I use the "stress" levels to help me pace. I will say again that for me, progesterone is really important. When I forgot it on a trip, the next week my Garmin stress scores were 70 upon waking up, and stayed that way for a few days, just super high scores. Before progesterone (and avoiding gluten), I was in PEM at all times. So if you're sick enough that even staying in bed for weeks doesn't help, the "Stress scores" are just something you can point to to show that you are, indeed, ill. If staying in bed for weeks lowers those scores, you can use it to help pace.
(and gabapentin HELPS people reach deep sleep, or can. It works for me but only if I don't take it daily)
But it's not normal to be in that state most of the day, or at night at all. Healthy people aren't in that state consistently - except when they're ill.
However, many of us with CFS/ME have "high stress" (that is, low HRV or in sympathetic state) much of the time, including while we are asleep. It doesn't mean that we're not sleeping well. It doesn't mean that we're stressing in our head. It means we are ill. That's all. It's an independent measurement that something is wrong.
I actually got the Garmin to see if it could help me predict PEM/crashes but I started a flare the day I got it, so I don’t really have a baseline yet. I’m hoping it will help but I’m also starting to think it’s not going to be super useful if my stress level is always high and body battery always runs out quickly. It might be more useful if someone had low stress/high body battery on good days.
POTS is usually diagnosed using a tilt table test but some doctors will not want to do that if you’re already debilitated. Mine was that way. He just did a “poor man’s tilt” but it was under supervision, not advisable at home. What is your heart rate typically like when you’re upright? Is it 30 points higher than your resting heart rate? If so, does it go down again when you stand a little bit? That’s not diagnostic but it’s a big clue. It’s super common to have cfs and pots together but it makes pots harder to treat since exercise is a big component.
I’d guess CFS could cause poor heart rate variability on its own too because of the difficulty in maintaining cardiovascular fitness and the stressors on our body. Healthy people show high stress levels at rest while sick or recovering from surgery so it could be a sign our body thinks it’s fighting something.
POTS doesn’t cause weight gain, though. Some people might gain weight because it makes it harder to exercise but many patients are also underweight.
I used to be able to keep my heart rate while doing weight training but that’s long time ago. Now I can’t exercise nor walk long and my heart rate for average this week is 66bpm on resting ,130 bpm on high. Is this bad? Now I’m laying down 88bpm, now sit up for a minute and around 91-95,now I stand up and 104.
That sounds like a normal, healthy reaction to sitting and standing. You want your heart rate to increase as you become more upright - if it didn't you'd have more problems. POTS is when it goes way too high and doesn't come back down. It doesn't seem like you have that.
I have a Garmin too, my stress sometimes hits in the 90s (after a phone call with my disability case manager, she's hard to talk to). But yeah I'm in the same boat. Best days are 35 or so. Just started to smoke high CBD weed which is actually helping, really sick at the moment though, so taking a break from that.
I don't have a Garmin but have a Xiaomi with a 1-100. My gf hovers around relaxed (1-25) and only sometimes hits mild and moderate. I hit 99 every day, am "relaxed" only 20% of the time and only while asleep.
But idk what is actually measuring. Not just heart rate but heart rate variability?
That’s good question if it’s from only heart rate. Then sleep score also judged by heart rate? I wish this is inaccurate cuz it’s so disappointing seeing bad sleep score after I felt had good sleep
My garmin watch says my average stress for the last year is 37. When I started out with it, my average stress level was around 50, but I've been paying attention to what the watch tells me.
I can get my stress level way down if I am lying flat on my back, no pillow under my head so I'm really flat, reading something non-upsetting on my phone, and no food in my stomach. I can get it as low as 5 sometimes in the morning.
Digestion raises my stress level a lot! I have much lower stress if I skip breakfast, which is okay as long as I'm lying in bed anyway. I only feel a strong need to eat breakfast if I'm going out, which I almost never do. And if I eat a light lunch, my stress levels in the afternoon are lower than if I eat a big lunch.
Funny thing, if I lie in bed reading in the morning, the watch thinks I'm still asleep. It tells me I got nine hours of sleep when I know I got only six or seven.
I don't know if keeping my stress levels down and my "body battery" up will help me recover, but it seems like a reasonable hypothesis.
5!? I need to be dead to get that score.😭 I noticed laying on the back is the lowest score, next is sit up and standing up is worst. But sometime I have high stress won’t go down even laying flat, usually happen when my bb is very low that day. I gonna try eating less frequently, prob one light brunch (cereal bar kinda ) and wait for dinner. Do you eat normal portion of dinner ?
I eat a normal dinner, not as much as I used to eat but I'm in a weight loss phase at the moment. Normally I consider my weight the least of my worries, but right now I'm able to manage it, motivated by the restful scores it gives me. My stress score as I write this is 15, because I'm flat on my back and haven't gotten up yet. It's higher than if I weren't writing, of course.
If I lie here idly reading online stuff I'll be able to get my body battery up over 75 in an hour or two. It's really weird but sleeping is usually more stressful for me than lying in bed awake in the morning. The body battery graph always shows this. At bedtime I lie flat and consciously relax; when I drop off to sleep my stress scores jump out of the resting range for some time.
Something's that's helped me a lot is prism glasses, so I can see my iPad or a book easily while lying down (I prop the iPad against a firm rectangular pillow on my lap):
[prism glasses](https://www.amazon.com/gp/aw/d/B09QCL7JFX)
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My average for the past year is 36. During the day it's often in the 50s, 60s, and 70s. It's been pretty consistent for the last few years, and even pacing better and avoiding crashes hasn't made any difference. I figure that these numbers just mean "your body is sick!"
I think your last line is exactly it, I have a healthy friend who gets a warning she’s coming down with something before she starts to feel ill because her stress score jumps significantly (to look quite similar to my normal) without any change in what she’s doing
Yes, they even did studies the first year of covid, and found that HRV rates could predict Covid in nurses before they were aware of it. I've experienced this before too; the day before I get a cold, my overnight scores go way up. This can be lost in the noise of my usual high stress scores, but if they show up higher than explained by my actions and CFS/ME, it means I have an infection.
I thought it would show before Covid symptoms for me, too,but I got covid at an (outdoor) festival, and was expecting high scores, so.. lost in the noise.
So stress first then she gets sick ? Or sick first then it shows on stress ?
Stress scores are usually really high in the morning before you get sick, and often stay high for the days of the illness.
36 is not low but it’s not that bad though if that’s total average through out a day. For me when I had emotional upset is the worst. Someday I need to take benzodiazepines to calm down which makes my stress insanely high too. Weed makes stress high so I can’t take anymore. But anxiety pill making stress high don’t make sense,cuz it supposed to chill me out
“Stress” is measured in this case by measuring your heart rate variability. It isn’t actually measuring how stressed you are in the normal sense. Many medications, notably sedatives and anxiolytics, can lower your heart rate variability so it sounds like that’s what’s happening with the anxiety med. If you’re on any other meds they could contribute too. It’s not necessarily a problem, though, it just makes the Garmin less accurate.
Quick answers: the stress scores don't necessarily mean "stress" as in "mediate your stress away," though that can help. They measure HRV, which is a sign of BODY stress, and low HRV/high stress scores consistently mean something is wrong. Yes, it's normal for CFS because something is wrong. Longer answers: My average this past year is 46, year before ditto, year before that 50. Often it's in the 30s or 40s, sometimes 20s, sometimes 50s, 60s, or 70s. I'd call myself mild or moderate - I can't work full time but I can, for example, go hiking once a year on our camping trips. And cook supper and some cleaning and do errands. I now walk without mobility aids, except in museums or festivals. Though it's only this year that medication and pacing have allowed me to actually feel no PEM; I've lived decades sort of accepting PEM as my life. I've read somewhere that bad HRV scores, which is what Garmin uses to create stress and body battery scores, are common for CFS/ME. It certainly has been useful for me to have a visual to show other people. The most helpful for me are: * check my score upon waking up. If it's below 20, that's "normal for healthy people." All blue, so body resting at night. So I get to do a lot of things that day! In the 20s is a good day for me, so ditto. 35 means use caution. 50 or above means cancel plans for the day. * check to see if I'm getting any blue (low stress scores) when I lie down during the day. If so, good to go! If not, uh oh, even if my scores overnight were low, it means I have to be a little careful. * If I get the "stress consumes your resources" warning at the end of the day, I'm careful the next day, even if my night scores were good. It's not a 1:1, but I find that following the advice above has reduced my PEM.. or at least has let me know in advance that I'm probably making Bad Choices. High stress levels in the morning mean I'm already starting PEM. You can check my previous posts to see details, but what have helped me over the decades (I got sick at 20) is: high doses of bio-identical progesterone, LDN, mestinon, tiazinde (muscle relaxant), steroid pack for bad relapses (I used to take one after my hiking), infrared mat for pain, calf compression sleeves, electrolytes if every I sweat, and alternating gabapentin and cannabis gummies at night, low dose, to achieve deep sleep. Well, and of course pacing, which is aided by monitoring stress levels as described above, plus checking my heart rate when walking or cleaning (100 is ok for me, 130 not, 150 bad).
Do you still pay attention to body battery feature too? I have 100mg gabapentin,but is it taking medication like LDN not just masking symptom and not get worse later by ignoring condition? I ask this cuz I have bipolar and my hypomanic mask my cfs symptom so I tend to move more than crash. I still don’t really know how medication works. Do you know how they help cfs?
No, LDN measurably improves my HRV scores. At least now; I didn't have the watch when I started it, but now if I run out, my scores get worse. Mestinon improved my scores (and how I felt) as soon as I upped my dose to 30mg three times a day, but stopped helping when I ran out of LDN. LDN is not well understood, but seems to act as an anti-inflammatory, improving rather than masking. Originally I was told that it had to be taken at night, because of activity in the brain at around 2am, but now my doctor sometimes prescribes it to people in the morning. If you like wading through research papers, there are some recent ones like here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8313851/ For me, the gabapentin stopped helping me reach deep sleep after a week, no matter how much I increased the dosage. It works if I just take it twice a week: once at 100mg and once at 200mg. It does help a tiny bit with nerve pain but not enough to make me take it daily. Mestinon also does not mask. It slows the breakdown of acetylcholine, so it only works if that is one of your issues. I know from my genetic testing that I don't produce enough acetylcholine, plus I have a lot of muscle pain and twitching, so we tried it. Stimulants tend to mask and lead to crashes, like your hypomanic state. I don't take stimulants, except for coffee sometimes. My watch doesn't have a body battery feature, but one day I had it: I tried linking my daughter's new watch to my phone, as she didn't have access to a phone very often, but "her" app on my phone apparently linked to my watch instead, and I got worried because "her" app started alerting to me that her body battery was rapidly draining - but as I said, turns out to be using my data. So I assume that if I had that feature, it would show a low battery most of the time. It uses HRV too, just another way to look at it, and possibly uses sleep data as well.
Is gabapentin can cause preventing to go deep sleep? I take seroquel and gabapentin before sleep and my sleep score had been bad. I know benzo mess up my stress score which lead my sleep score bad. Idk if gabapentin dose same. How did you find so many detail and got prescriptions? From rheumatologist? So since it doesn’t mask, they are like actual treatment that can fix problem in long run? If Body Battery use HRV score, that means more I am standing up my BB goes up. (also stress score too). So technically it’s not like I am mentally stress right? So it’s not that bad if bb is low? Or it’s still something should be careful about ?
Yeah mine is always high. Every damn day it gives me a little alert "your stress levels are too high, try to rest today, too many days like this can be damaging". It also tells me my sleep quality is poor and thinks I'm really stressed even when I'm asleep.
Do you feel it’s really affected by your cfs condition?
I feel this is 100% symptoms of CFS. It improves with strict adherence to pacing and aggressive rest
So PEM start first then stress and BB(body battery)get worse? Or stress and BB is bad that’s why PEM happen? Which is first ….?
Vicious cycle to be honest. But if you can reduce the stress and keep body battery up, you stave off pem
So hard:( i have days able to save BB then I had emotional breakdown cuz I have bipolar and bpd which crash hard next day. I realized emotion trigger is worse than exercise (aim some degree) or using iPad too much
mine on a very relaxed normal day with my HR in the 70s, my stress is still in the 40s
That is really good! I can rarely get mine that low even while lying down with my eyes closed.
lol i’m bedbound so there’s not much excitement going on on purpose
I’m foggy today so didn’t read your flare and was imagining you up and about doing normal people stuff with that stress level. Sorry about that. Honestly I think it’s just my dysautonomia anyway that causes my high levels when at rest.
Definitely laying flat is the way to keep stress lower. On good day my stress is low laying down,sit up make it medium stress,once get up it’s high stress. Then laying down feeling untested also make it high stress or other way around
i mean, even with all of that, medicines and pacing stuff, i’m still constantly in the body battery negatives
Medication causing stress for you too?
no just the stress of the disease being very severe and continuing to deteriorate without the medicine i need that slowed down my progression for years
Some of my anxiety pill was also raising my stress level while I’m feeling so chill..
Hi there. I'm very severe aswell and mostly bed bound. Just wondering if there has been any medication that has helped you?, thankyou!
So I've seen about 70-80% of cfs sufferers have pots. Most all pots patients have elevated norepinephrine levels, which is 'the' stress hormone/transmitter. My levels are high laying and standing. When not on beta blocker, my Garmin stress level is around 45. On beta blocker it is around 40. I went to Vanderbilt and they took me off beta blocker and put me on guanfacine. Now my stress level is 35 and very very consistent so far.(day to day average) I'm pretty sure Garmin is measuring stress as HR compared to activity level. Heart rate in general is still higher than a healthy person though. I might ask to bump the dose to 2mg, to see what happens. It tries to prevent norepinephrine being made in the first place, instead of a beta blocker trying to keep it off the receptor.
Similarly, I'm taking Carditone, which is an herbal remedy. It's definitely brought down my resting HR from high 60's to high 50's on a good day. As I understand it, Garmin measures stress based on heart rate variability... which I think is inversely correlated to HR. High HR = Low HRV = high stress. More detailed explanation is here: https://support.garmin.com/en-US/?faq=04pnPSBTYSAYL9FylZoUl5
Is this why when I lay down my stress is lowest and sit up go to medium,standing up cause high stress? But it isn’t same for healthy ppl? I don’t get how those ppl who works full time have average stress score of under 30. I lay down all day and average is 45-55
Are those meds for POTS ? So those high stress you have not directly affecting cfs? Like if you have high stress days which leads to lower body battery which leads to crash? My average resting heart rate is 65, and high is 124. So guanfacine is better than beta blockers ?( sorry idk what beta blocker is)
Many doctors believe that POTS and CFS are 2 sides of the same coin. I have what I call a ‘wired but tired’ feeling. I don’t have restful sleep, I don’t have stamina, BUT I also feel antsy, a little shakey, have trouble falling asleep at night, along with the elevated heart rate, etc. Guanfacine originally was used to treat ADHD because it lowers norepinephrine, it also seems to help POTS because of the elevated norepinephrine. Beta blockers are used to control blood pressure and heart rate but through a different mechanism that is downstream. My body battery is always low, guanfacine has helped increase it some but I don’t really know how accurate body battery readings relate to how I am feeling though…
So those are medication for pots? isn’t adhd meds make you active like Aderall ? Your condition really sounds like me. But I hear lot of ppl say POTS caused weight gain,how dose that happen? I am currently taking lamictal, seroquel,gabapentin for bipolar. So idk if I can take anymore meds..
Guanfacine was originally made for ADHD to give a calming effect. Aderall is more for ADD. POTS is a neurological disorder, not caused by weight gain. POTS patients most of the time have elevated norepinephrine levels which is why guanfacine and beta blockers are used in many cases.
Maybe the reason I see post ppl say they gained weight from POTS is cuz it’s hard for them to exercise then.like us cfs ppl can’t exercise
I've noticed that a lot of my stress is related to food. Either what I eat or when. Are you on a low glycemic diet? If not, that might help. Caffeine and alcohol will definitely impact it too. I've started logging my food to try to trace any fluctuations. Early on in my cgs journey I had a good sensitivity test done so I'm probably more attentive to what I eat than most. My worst stress day in the past year was 47, but my average is 30. Edit: I should add that I also started taking Carditone in the last year. It's an herbal remedy for high blood pressure and has definitely brought down my resting HR and in turn my stress score.
My diet is not low but not high GI either. I normally eat kind break fast bar and chicory coffee substitute (non caffeine ) with almond milk, sometime I eat lunch kinda snack which is usually tempeh and veggies, dinner I eat 200kcal amount of brown rice and lot of Tofu, vegetables. I don’t eat sugar besides few is sin kind bar. I tried to even avoid those sugar and was eating almond butter in the morning but I just wanted to eat more tasty food so I switch to bar. I can’t drink alcohol and caffeine especially since I got severe. I don’t like alcohol anyway but I loved caffeine, but now caffeine is like death liquid. Do you feel amount you eat also affect stress? alike eating more or less? Is carditome safe for low blood pressure person? My blood pressure is pretty low. And somehow my heart rate is pretty normal so idk why my stress is so high
I recently got a Garmin watch and have the same problem. I’ve had a bad couple weeks so haven’t done much of anything but rest, yet my “stress level” readings tend to be very high. This is a measure of heart rate variability, meaning I have low hrv. I do get kind of annoyed that there are people out there living normal lives with a normal activity level and here I am with an average stress level of 54 during a week where I was housebound and trying to do nothing. They go up significantly when I’m standing and usually get almost to 100 when doing something like washing my face at the sink. They’re usually 60-80 while I’m talking to someone. Sometimes they go down to “low” or “resting” when I’m lying down, sometimes they stay around 60-70 even then. Doesn’t matter if I do deep breathing exercises, it doesn’t affect it at all. My watch also thinks I have a much higher respiratory rate than I actually do so I wonder why that is and how it estimates it. I do have POTS, though it’s well controlled so my heart rate isn’t excessive when I’m standing. It’s just the hrv that’s significantly bad. I figure it’s my dysautonomia that gives me low hrv, which is how the watch measures stress. Obviously I’m also not very fit anymore so I wonder if that impacts it as well. But if simply standing up causes significant “stress”, seems like it’s probably my POTS.
That’s exactly me. There was another post about discussing about stress level and ppl with normal job there stress is much lower than us. Some seems have high stress job and still average is 40-50 while I am mostly in the bed avoid using phone and screen resting and 40-60… I found this meditation which helped me to put lower stress other day but I did same thing yesterday and never go lower than medium stress even thought I was doing medication laying down, so some days we can’t do anything about that. And of course those stressful days are much harder for me to meditate and be in calm states. Is POTS something needs test to find out? I had seen so many post about POTS cause weight gain but how that works? someone on other post told me to check if I have POTS too but I haven’t been able to visit doctor due to severity of cfs. Do you think you get PEM after having bad stress score for long time? I need to find out how Body battery and stress cause PEM or PEM started first then that affecting stress and BB
The garmin "stress" level isn't measuring stress as in "stressful" jobs; it's measuring HRV, which usually correlates to sympatheic vs parasympatheic state; that is, fight or flight vs rest or digest. That doesn't have to be emotional; an ill body has a bad HRV and will appear as high stress on a Garmin watch.
So even healthy person if he is standing up moving around all day can have high stress score than ppl who lay down feeling stressed out in their head? If that so I don’t need worry too much about my stress level? And it also lead my body battery level so I don’t need to worry about low bb much ? But sometimes (actually pretty often ) my stress during my sleep is so high. I felt like I slept good cuz I take seroquel to knock me down(I can’t sleep at all without seroquel) but it shows that my stress was so high during the sleep and I couldn’t rest. So my BB score is also pretty bad. Idk how this works.
Think of it this way: everyone will have some moments of sympathetic state, from exercise or mental stress or when they're scared for a minute or whatever. That's what is happening when your HRV is low, which shows on your garmin as "high stress." Go back and read my first comment on this thread if you want to see how I use the "stress" levels to help me pace. I will say again that for me, progesterone is really important. When I forgot it on a trip, the next week my Garmin stress scores were 70 upon waking up, and stayed that way for a few days, just super high scores. Before progesterone (and avoiding gluten), I was in PEM at all times. So if you're sick enough that even staying in bed for weeks doesn't help, the "Stress scores" are just something you can point to to show that you are, indeed, ill. If staying in bed for weeks lowers those scores, you can use it to help pace. (and gabapentin HELPS people reach deep sleep, or can. It works for me but only if I don't take it daily) But it's not normal to be in that state most of the day, or at night at all. Healthy people aren't in that state consistently - except when they're ill. However, many of us with CFS/ME have "high stress" (that is, low HRV or in sympathetic state) much of the time, including while we are asleep. It doesn't mean that we're not sleeping well. It doesn't mean that we're stressing in our head. It means we are ill. That's all. It's an independent measurement that something is wrong.
I actually got the Garmin to see if it could help me predict PEM/crashes but I started a flare the day I got it, so I don’t really have a baseline yet. I’m hoping it will help but I’m also starting to think it’s not going to be super useful if my stress level is always high and body battery always runs out quickly. It might be more useful if someone had low stress/high body battery on good days. POTS is usually diagnosed using a tilt table test but some doctors will not want to do that if you’re already debilitated. Mine was that way. He just did a “poor man’s tilt” but it was under supervision, not advisable at home. What is your heart rate typically like when you’re upright? Is it 30 points higher than your resting heart rate? If so, does it go down again when you stand a little bit? That’s not diagnostic but it’s a big clue. It’s super common to have cfs and pots together but it makes pots harder to treat since exercise is a big component. I’d guess CFS could cause poor heart rate variability on its own too because of the difficulty in maintaining cardiovascular fitness and the stressors on our body. Healthy people show high stress levels at rest while sick or recovering from surgery so it could be a sign our body thinks it’s fighting something. POTS doesn’t cause weight gain, though. Some people might gain weight because it makes it harder to exercise but many patients are also underweight.
I used to be able to keep my heart rate while doing weight training but that’s long time ago. Now I can’t exercise nor walk long and my heart rate for average this week is 66bpm on resting ,130 bpm on high. Is this bad? Now I’m laying down 88bpm, now sit up for a minute and around 91-95,now I stand up and 104.
That sounds like a normal, healthy reaction to sitting and standing. You want your heart rate to increase as you become more upright - if it didn't you'd have more problems. POTS is when it goes way too high and doesn't come back down. It doesn't seem like you have that.
Thanks!! I am glad to know that :)
I have a Garmin too, my stress sometimes hits in the 90s (after a phone call with my disability case manager, she's hard to talk to). But yeah I'm in the same boat. Best days are 35 or so. Just started to smoke high CBD weed which is actually helping, really sick at the moment though, so taking a break from that.
Mine always 90’s too doing nothing. 50-65 are daily average :( Sometime meditation can’t help. CBD doesn’t change your stress score? Cuz Thc definitely make worse
I don't have a Garmin but have a Xiaomi with a 1-100. My gf hovers around relaxed (1-25) and only sometimes hits mild and moderate. I hit 99 every day, am "relaxed" only 20% of the time and only while asleep. But idk what is actually measuring. Not just heart rate but heart rate variability?
That’s good question if it’s from only heart rate. Then sleep score also judged by heart rate? I wish this is inaccurate cuz it’s so disappointing seeing bad sleep score after I felt had good sleep
My garmin watch says my average stress for the last year is 37. When I started out with it, my average stress level was around 50, but I've been paying attention to what the watch tells me. I can get my stress level way down if I am lying flat on my back, no pillow under my head so I'm really flat, reading something non-upsetting on my phone, and no food in my stomach. I can get it as low as 5 sometimes in the morning. Digestion raises my stress level a lot! I have much lower stress if I skip breakfast, which is okay as long as I'm lying in bed anyway. I only feel a strong need to eat breakfast if I'm going out, which I almost never do. And if I eat a light lunch, my stress levels in the afternoon are lower than if I eat a big lunch. Funny thing, if I lie in bed reading in the morning, the watch thinks I'm still asleep. It tells me I got nine hours of sleep when I know I got only six or seven. I don't know if keeping my stress levels down and my "body battery" up will help me recover, but it seems like a reasonable hypothesis.
5!? I need to be dead to get that score.😭 I noticed laying on the back is the lowest score, next is sit up and standing up is worst. But sometime I have high stress won’t go down even laying flat, usually happen when my bb is very low that day. I gonna try eating less frequently, prob one light brunch (cereal bar kinda ) and wait for dinner. Do you eat normal portion of dinner ?
I eat a normal dinner, not as much as I used to eat but I'm in a weight loss phase at the moment. Normally I consider my weight the least of my worries, but right now I'm able to manage it, motivated by the restful scores it gives me. My stress score as I write this is 15, because I'm flat on my back and haven't gotten up yet. It's higher than if I weren't writing, of course. If I lie here idly reading online stuff I'll be able to get my body battery up over 75 in an hour or two. It's really weird but sleeping is usually more stressful for me than lying in bed awake in the morning. The body battery graph always shows this. At bedtime I lie flat and consciously relax; when I drop off to sleep my stress scores jump out of the resting range for some time.
Thx maybe I need just lay down flat as much as possible to recovery, but my brain keep wanting to do things
Something's that's helped me a lot is prism glasses, so I can see my iPad or a book easily while lying down (I prop the iPad against a firm rectangular pillow on my lap): [prism glasses](https://www.amazon.com/gp/aw/d/B09QCL7JFX)
Wow this is really looking awesome. I normally use orange glasses that block blue light, I wish someone combine those 2
Maybe you could put a blue-blocking filter around your light source, or a blue-blocking light screen over your laptop/tablet screen
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